Quitting, but not for lack of trying

Posted on 23.11.2013


The last few months have been ridiculous to say the least, and I know I’ve been kind of quiet. To say that I have been stressed or busy would be correct, and also a gross understatement. I have been so stressed about so many different things that it has started to effect my health.

The short story for anyone who doesn’t know is that I had traveler’s medical insurance when I moved from Germany back to the states. It covered me until it ran out, and you can only renew it so many times before you can’t anymore. The plan once I got back to the states was to enroll in MD state healthcare, which is guaranteed for people with pre-existing conditions, including mine. I left and had a few months of meds left to get by on. Not enough, but I’ve made it last. I’m not happy about that, but I actually dislike the daily injections and since we’re not even sure the drug DOES anything, it’s not something I am overly concerned about.

Copaxone2At the moment, I’m sitting in England with 10 injections left. I never got to enroll in MD health care because I didn’t stay and got no job offers. I got a job offer in Japan, which I have accepted. I am super excited about it, but it has thrown a significant wrench in my plans. Namely, my German travel health care ran out, I can’t renew it, and I’m an uninsured US citizen sitting in England. Oh yeah, and I have that pesky pre-existing condition, which effectively makes me uninsurable.

Remember what I said about not bothering to plan for shit anymore? This is a part of that. Since realizing my meds were running out, I have tried every possible avenue to acquire some form of health care, in order to just get my meds refilled. I have contacted ALL of the online travel health insurance sites, and just sent out the last very detailed inquiries tonight. If these guys can’t help me, no one can. Thank god these meds aren’t life-saving.

I have looked into the EU resident in the UK route. It would work if I still had the health care I had when I was employed. Since I don’t, I would fall under the dreaded category of ‘benefits tourist’. I don’t want to fill in the paperwork for the UK, I’m not even supposed to be here today! I am no longer insurable in Germany even though I technically still have a mailing address and a bank account (taxes are coming), since I am not employed. Most US insurance companies are calling me a UK resident since I am sitting here now, even though I am technically a US resident and citizen. The UK calls me a tourist, which I certainly am. I have no desire to live here yet. My ‘trip’, according to US travel insurance places, has ‘already started’ and I won’t return to the US, so they can’t help me, either. Once I am in Japan I can apply for their health care, but until then, I am on my own.

My MS symptoms are not great at the moment, but I am dealing with them and they are slowly getting better. I got my handwriting back for the most part and now I just need to do some work on penmanship. I was finally able to squat without holding the wall or the sink. Progress. I can walk. The shakes are still there, but I was able to chop an onion last night without the fear of getting my finger. I can type faster than I was able to for a while. I’d say that’s a bit like recovery, even though I am still not able to do workouts. At least I’m working.

I made the decision the other day that I am going to take all 10 of my injections as I should, each day, until they are gone. Winter is normally my best month and I should be fine. If worse comes to worse, I can pay the 45-pound copay to see a Neurologist here and get a PX for some steroids, which are exponentially cheaper than my Copaxone ($5 against $1500, easy choice). But if these next few inquiries I’ve sent out insurance companies come back negative, then I am just going to stop looking for a solution to this problem and focus on the things I have some control over. Worrying each day isn’t going to stress me any less, and stress is a huge issue for me.

I’m honestly completely fed up with this grey area I’ve found myself in, and I’m a bit shocked that the US doesn’t offer SOMETHING to cover me. I hope that once the ACA kicks in, there will be an option for travel as well for all of us with pre-existing conditions. Because right now, it seems that the insurance companies think that since I’m ‘sick’, I should stay home locked in a box. Without insurance. No one can seem to fathom the idea that disabled people (please, have you seen me?) travel. Because aren’t we all wheelchair bound or something? With iron lungs?

I feel bad when my friends and family tell me to stop messing with my health and find a solution. I invite any of them to try to figure this one out. I have tried every route, and I am really of the opinion after these past few months that I am some kind of anomaly. There is NOTHING left to try. So I’m done searching and I’m done talking about it. If I can’t find anything, I will be content to keep taking tons of vitamins until I get to Japan and can get some real health insurance. Because I’m exhausted, this is ridiculous, and I’ve got other things to worry about that I actually CAN control.

This process has caused me to feel very alone. I know I’m not, but helplessness isn’t something I’ve experienced in a while and it’s good to be reminded of how hard I do actually work when I am trying to accomplish something. I often feel like a slacker and that I’m being lazy, but I know that even on a bad day, I get more accomplished than most do on their best days. I have to stop being hard on myself for not being able to Macgyver some kind of solution and get back to dealing with everything else.

I quit. There, I said it.

Posted in: life, medical, MS, teaching, travel